Pages

Sunday, August 21, 2011

Not giving up!!

I haven't posted anything new in a while. I've been blank as to what to write now. I still have a story because I am still living my life. I just don't know where to pick up. I've become frustrated because I have been posting things about the Walk to end Alzheimer's on my facebook page, and other things about my family. I just don't think people are getting it. I do NOT want people's money (yes I've asked for donations, but that is part of doing the walk) I do NOT want people's sympathy, or to think I am asking anything of them. I do NOT want anyone to think I'm doing this all for attention. I know to some this is all new to them, and by me being so public now with it all may seem strange. I know that people have different illnesses in their families. I know that everyone has lost or knows someone that has lost a loved one to some sort of illness or disease. I am NOT saying that what are family has is any worse than anyone else's problems. I know some people don't want to hear about sad depressing things, and I agree I don't either. BUT...
I never accepted this disease when I was going through it with my own father, and now I have. I am just letting people know what it is, what it does, and my family is right here going through it. You don't have to be my friend because of it. I may come across pushy with this all, but I either go full force with something or I don't go at all. I haven't been tested yet, but I am, and if I have the gene or not I'm going to fight for all the people that are or will be going through it. Right now, I want to stand up and fight for EVERY disease, and maybe someday I can get my foot in the door to do that.
I always think to much about what other people think, and I let that get in the way sometimes of things I do. I have very low self esteem, no matter how much my loved ones try to build me up. I can't let that get in the way with this. I just don't want anyone to think I am all of a sudden trying to get sympathy, or acknowledgement for something. The only thing I want is to help my family, and anyone else get through this disease, and I want to do all I can to benefit towards research and a cure.
People that don't know someone personally might not pay much attention to how important awareness is, because they aren't or haven't experienced it. I understand, because before my dad got sick I couldn't relate to many people's struggles. I understand that many people may already give and support a different association or foundation, and that is wonderful. I don't expect everyone to drop what they are already doing and run to my families side. I am doing this for the DeMoe family, and for right here where I live it also includes me and my children and my sister and her children. So think whatever you want, say whatever you want, but I'm not going to stop talking about it.
I let my bitterness, and spitefulness get in the way to long with this disease. I have opened up, I have let go, and I have accepted whatever God deals me. He has my life in His hands, and my families as well.

Me and My Alzheimer's

Me and My Alzheimer's

A DeMoe forever.

Welcome! My father was diagnosed at the age 48 with Familial Early Onset Alzheimer's in 1995. He died in 2003 at the age of 56. I feel like there wasn't enough information, support, and encouragement at that time for families going through what I was. I want to do all I can to shout out awareness for this disease and help anyway possible by telling my story and experiences.

My older sister and I have recently participated in the research study DIAN at Washington University in St. Louis. My cousins have participated in this study at the University of Pittsburgh. They have also been apart of the HBO documentaries "The Alzheimer's Project".

We are all helping any way we can to help scientists and doctors find a cure.